Here are a few pictures of some of the centerpieces and the banner we had at Lily's party!
Wednesday, May 27, 2009
Decorations from Lily's Birthday Party
Here are a few pictures of some of the centerpieces and the banner we had at Lily's party!
Tuesday, May 26, 2009
Baby Dedication/First Birthday Party
Well, it was a long but exciting, fun-filled, special weekend. I am tired and we have a therapy packed day ahead of us. Anyways, I didn't post last week because I was sooo busy getting ready for the party. My house was such a mess because after spending 3 1/2 months at the Cleveland Clinic I kind of let things go downhill. I had a lot of catching up to do. I sent Gwynny to my sitter's house a couple days and to my in-laws one day and that really helped me to get things ready. Anyways, everything went off with pretty much no glitches. The Baby Dedication was soo touching. We had our friends Scott and Kathie read the poems " Welcome to Holland" and "Heaven's Special Child". It was soo moving. As Pastor prayed for Liliana and annointed her little head with oil I realized once again how lucky we are to have been given the opportunity to raise such a wonderful child as her. Many of our family and friends were there in church to celebrate and the speaker that morning was excellent. Everyone came back to our house for the birthday celebration and we had a great time. Lots of good food, good conversation, and just plain fun. Lily never did get to enjoy her birthday cake because by that time she was so tired she feel asleep on her great grandma's lap. I saved her little smash cake for her actual birthday so we can have some fun with that. She got a couple of toys, money, and a gift card. I see shopping in the future! LOL! All in all it was a great time had by all. I will post a link to the pictures since there will be sooo many of them. Now where the story begins...
I can't believe it has been almost a year since we had Liliana. I remember when I went to my OB's office and he told me that they needed to schedule a C-section because the baby was continuing not to grow well in the womb and they needed to take her now. I was about 37 weeks when he told me this. I remember thinking I'm not ready for this baby yet. She wasn't supposed to be born until around June 17th, but God had another plan. A completely different plan in store that I never dreamed I would be living out. She was born on June 6, 2008 and weighed 5 lbs. 10 oz. and was 17 1/4 inches tall. She was the most beautiful baby! The C-section went very well, except for a few problems giving me the spinal that didn't want to go into my messed up spine. Anyways, they cleaned her up and I got to hold her and they wheeled us off to recovery. They then took her and eventually once I was settled into a room the news was broke that they thought she may have Down syndrome and that we needed to take a blood test and wait almost two weeks to get the results back. I was devastated. Why me Lord? What did I do to deserve this? I am not capable of taking care of this child? I don't think I want this child? (Yes, I actually thought that at the beginning), but God has a way of working in us and through us and helps us to see that things are going to be ok and that he is in control. As if finding out that your child has Down syndrome wasn't enough, the following day we were told that she was born with a congenital heart defect that would require surgery between the ages of 4-6 months of age. Oh my gosh! Are you kidding me? I broke down and cried hysterically! After a lot of reflection and whining and crying I decided that the most important thing of all was that my child had to live. The heart issue was much more serious than her having Down syndrome. I decided that I was going to make the best of things and that I was going to accept things and move forward and try to be the best advocate I could possibly be for my child. So, I started to read a bunch of those books about parenting a child with Down syndrome until someone told me not to read it anymore, that it would just make me more emotional and stir up a lot of unwanted emotions that I really didn't need at that time. So I stopped. Instead I sought help from a local group Down syndrome Northeast Ohio and I found that there really are a lot of families out there just like me. They offered advice, support and anything else that I needed and it was perfect timing. You see, that is how God works, in his perfect time. He gives us what we need, when we need it. Liliana then spent 2 1/2 more weeks at Fairview Hospital learning how to suck from a bottle. She came home to lead a somewhat normal life until it was time to prepare ourselves for the open heart surgery she required. Liliana began to go downhill with her bottle feeds and was admitted to Cleveland Clinic Children's Hospital to start her on an NG tube and learn how to feed her this way. We never dreamed that things would come to that but the doctors assured us that she would do so much better with the bottle after she had her heart surgery. So we learned the ropes and feed her in this manner until November 4, 2008 when she went in for her first surgery. What was supposed to be a 7-10 day hospital stay turned into about 101 days if I remember correctly. It seemed like it would never end, but looking back on it now it seems so long ago. Liliana has come soo far! She definitely has a long ways to go but she really has come soo far! I remember sitting in her room day after day just asking God when it would come to an end. I had doubts and fears fill my mind at times and I still do today sometimes. I just knew I had to stay strong for my baby! I had to keep believing! I had to keep on striving to stay positive and every day that I did the Lord blessed me in more ways than you can imagine. If I was having an extremely bad day he would send someone across my path that would give me words of encouragement, or just simply a "hello" or a smile. I took advantage of the free rakki (spelling) massages they gave at the clinic and made a lot of new friends along the way. It was an experience that I will never forget as long as I live. My baby that came sooo close to death was spared by our marvelous creator. The ultimate healer, made my baby's body whole again. For this I am thankful, and for this I will praise the name of the Lord.
God used a lot of people in a lot of ways in our lives. He used our friends Scott and Kathie to minister to us when we felt like no one really cared. Their love and concern definitely made a difference and it helped lead us to the church we now attend. CTK church became a huge support system for us. They had a prayer chain going, they helped us financially, and they gave us food at Thanksgiving and Christmas. They reached out to us with open arms and accepted us willingly. We had several visits and phone calls from Pastor Tom and each and every time he came to visit or call it lifted our spirits and let us know that people really cared. Liliana has no idea how many people were praying for her and how many people love her. She is such a lucky little girl!
So as I look forward to the future. I feel very optimistic. I feel hope. I feel like Liliana really has a chance. She has a support system. She can be whatever she wants to be and the Lord has given me the tools I need to help her succeed. I hope to have many, many more birthdays with Liliana celebrating her successes and celebrating her wonderful, marvelous life!
I can't believe it has been almost a year since we had Liliana. I remember when I went to my OB's office and he told me that they needed to schedule a C-section because the baby was continuing not to grow well in the womb and they needed to take her now. I was about 37 weeks when he told me this. I remember thinking I'm not ready for this baby yet. She wasn't supposed to be born until around June 17th, but God had another plan. A completely different plan in store that I never dreamed I would be living out. She was born on June 6, 2008 and weighed 5 lbs. 10 oz. and was 17 1/4 inches tall. She was the most beautiful baby! The C-section went very well, except for a few problems giving me the spinal that didn't want to go into my messed up spine. Anyways, they cleaned her up and I got to hold her and they wheeled us off to recovery. They then took her and eventually once I was settled into a room the news was broke that they thought she may have Down syndrome and that we needed to take a blood test and wait almost two weeks to get the results back. I was devastated. Why me Lord? What did I do to deserve this? I am not capable of taking care of this child? I don't think I want this child? (Yes, I actually thought that at the beginning), but God has a way of working in us and through us and helps us to see that things are going to be ok and that he is in control. As if finding out that your child has Down syndrome wasn't enough, the following day we were told that she was born with a congenital heart defect that would require surgery between the ages of 4-6 months of age. Oh my gosh! Are you kidding me? I broke down and cried hysterically! After a lot of reflection and whining and crying I decided that the most important thing of all was that my child had to live. The heart issue was much more serious than her having Down syndrome. I decided that I was going to make the best of things and that I was going to accept things and move forward and try to be the best advocate I could possibly be for my child. So, I started to read a bunch of those books about parenting a child with Down syndrome until someone told me not to read it anymore, that it would just make me more emotional and stir up a lot of unwanted emotions that I really didn't need at that time. So I stopped. Instead I sought help from a local group Down syndrome Northeast Ohio and I found that there really are a lot of families out there just like me. They offered advice, support and anything else that I needed and it was perfect timing. You see, that is how God works, in his perfect time. He gives us what we need, when we need it. Liliana then spent 2 1/2 more weeks at Fairview Hospital learning how to suck from a bottle. She came home to lead a somewhat normal life until it was time to prepare ourselves for the open heart surgery she required. Liliana began to go downhill with her bottle feeds and was admitted to Cleveland Clinic Children's Hospital to start her on an NG tube and learn how to feed her this way. We never dreamed that things would come to that but the doctors assured us that she would do so much better with the bottle after she had her heart surgery. So we learned the ropes and feed her in this manner until November 4, 2008 when she went in for her first surgery. What was supposed to be a 7-10 day hospital stay turned into about 101 days if I remember correctly. It seemed like it would never end, but looking back on it now it seems so long ago. Liliana has come soo far! She definitely has a long ways to go but she really has come soo far! I remember sitting in her room day after day just asking God when it would come to an end. I had doubts and fears fill my mind at times and I still do today sometimes. I just knew I had to stay strong for my baby! I had to keep believing! I had to keep on striving to stay positive and every day that I did the Lord blessed me in more ways than you can imagine. If I was having an extremely bad day he would send someone across my path that would give me words of encouragement, or just simply a "hello" or a smile. I took advantage of the free rakki (spelling) massages they gave at the clinic and made a lot of new friends along the way. It was an experience that I will never forget as long as I live. My baby that came sooo close to death was spared by our marvelous creator. The ultimate healer, made my baby's body whole again. For this I am thankful, and for this I will praise the name of the Lord.
God used a lot of people in a lot of ways in our lives. He used our friends Scott and Kathie to minister to us when we felt like no one really cared. Their love and concern definitely made a difference and it helped lead us to the church we now attend. CTK church became a huge support system for us. They had a prayer chain going, they helped us financially, and they gave us food at Thanksgiving and Christmas. They reached out to us with open arms and accepted us willingly. We had several visits and phone calls from Pastor Tom and each and every time he came to visit or call it lifted our spirits and let us know that people really cared. Liliana has no idea how many people were praying for her and how many people love her. She is such a lucky little girl!
So as I look forward to the future. I feel very optimistic. I feel hope. I feel like Liliana really has a chance. She has a support system. She can be whatever she wants to be and the Lord has given me the tools I need to help her succeed. I hope to have many, many more birthdays with Liliana celebrating her successes and celebrating her wonderful, marvelous life!
Thursday, May 21, 2009
Wednesday, May 13, 2009
Wordless Wednesday...NOT!
Well, I was going to take some candid shots of my girls this morning and post them for all to see but of course went to turn on my camera and it said to change the batteries and I don't have back-up. :( Oh well! So now you get to listen to me blab for awhile. Let's see what is new and exciting here. I am busy getting ready for Liliana's Baby Dedication/Birthday Party. One would think that party planning and preparations are supposed to be fun and they are except when you have a ton of cleaning to do. My house is in a bit of chaos! We have been doing some remodeling around here over the past few months since Lily came home from the hospital so certain rooms have been neglected. Also I just haven't cleaned as well as I should. I hate cleaning so now I am forced to do major cleaning. Not easy with two kids and Lily with all her medical issues.
Well, we only have about 2 and a half weeks left and Liliana will be going in for her G-tube surgery. I have been trying to prepare myself mentally for it but it is hard. I know it is a very common procedure and Lily will really only be in pain the first night after placement. They will give her morphine for pain to which I know she will probably need more. Anyways, they called yesterday to go over all the details so now it is just a waiting game. I am trying to just focus on the party and Baby Dedication and all the fun of that and try not to worry about the surgery. The GI doc did say that there may be a slight chance that when she goes in with the endoscope to find an appropriate place to put the tube she might not be able to find the right spot. If this is the case then Lily would have to come back in and the surgeons would have to make a much bigger cut in her abdomen and open her up to find an appropriate spot. I pray that all goes well the first time. We have been down the surgery road before and have not been so fortunate. I told the doctor we are going on vacation around the 4th of July and that I didn't want anything stopping that from happening. WE NEED A BREAK! Especially Bill, sometimes I think he is going to explode if he doesn't relieve some stress. We also haven't been on a vacation for over 2 years. She assured me that if there was a problem that they would not do surgery until after we came back from vacation which would be sometime in July. I certainly do not want to wait that long since we are sooooo done with this NG tube.
On another note, my theme for Liliana's party is teddy bears. The plates and napkins I got have little teddy bears on them so I thought it would be appropriate. Also when Lily was in the hospital she got a lot of teddy bears. Every time a child has an open-heart surgery they give them a teddy bear in the PICU. So I am going to use some of those bears to help decorate my house. My aunt in Alabama is going to make an outfit for the Build-A-Bear she got that will match the outfit the bear is wearing on the plates and napkins! Sooooo cool! Well, I better get my butt up and start cleaning. Have a great day!
Well, we only have about 2 and a half weeks left and Liliana will be going in for her G-tube surgery. I have been trying to prepare myself mentally for it but it is hard. I know it is a very common procedure and Lily will really only be in pain the first night after placement. They will give her morphine for pain to which I know she will probably need more. Anyways, they called yesterday to go over all the details so now it is just a waiting game. I am trying to just focus on the party and Baby Dedication and all the fun of that and try not to worry about the surgery. The GI doc did say that there may be a slight chance that when she goes in with the endoscope to find an appropriate place to put the tube she might not be able to find the right spot. If this is the case then Lily would have to come back in and the surgeons would have to make a much bigger cut in her abdomen and open her up to find an appropriate spot. I pray that all goes well the first time. We have been down the surgery road before and have not been so fortunate. I told the doctor we are going on vacation around the 4th of July and that I didn't want anything stopping that from happening. WE NEED A BREAK! Especially Bill, sometimes I think he is going to explode if he doesn't relieve some stress. We also haven't been on a vacation for over 2 years. She assured me that if there was a problem that they would not do surgery until after we came back from vacation which would be sometime in July. I certainly do not want to wait that long since we are sooooo done with this NG tube.
On another note, my theme for Liliana's party is teddy bears. The plates and napkins I got have little teddy bears on them so I thought it would be appropriate. Also when Lily was in the hospital she got a lot of teddy bears. Every time a child has an open-heart surgery they give them a teddy bear in the PICU. So I am going to use some of those bears to help decorate my house. My aunt in Alabama is going to make an outfit for the Build-A-Bear she got that will match the outfit the bear is wearing on the plates and napkins! Sooooo cool! Well, I better get my butt up and start cleaning. Have a great day!
Sunday, May 10, 2009
Mothers
This morning we received this poem from church. It really contains scripture, but I thought it was so encouraging and uplifting that I wanted to share it with you. So here it is...
Mark 3:33-35 "Who is my mother? Who are my brothers?" Then he looked at those around him and said, "These are my mother and brothers. Anyone who does God's will is my brother and sister and mother."
I tell you mothers. I love you with my everlasting love. My everlasting love is upon you and my everlasting arms are underneath you. I draw you to me with cords of my love.
I reach out my royal scepter to you. I call you into my Holy of Holies. I have chosen you to be the mother of my children. I bring your children forth from your womb. You are highly favored.
My Holy Spirit shall come upon you and the power of the highest shall over shadow you. Therefore, the Holy Child shall be called the Son of the Highest.
You shall bear my Son within you and carry Him so all the world will see the light of my Son and the love of my Son. I tell you be bearers of my Son.
I tell you. I desire that each of you bring forth my Son in actions of love. By this shall all men know that you are my disciples if you have love for one another.
I tell you. I fill you with my Spirit, for with Me nothing shall be impossible.
I tell you. Do not be cast down or cast out. Be blessed. Cast your cares upon Me.
Why do you let your cares weigh you down? Leave your cares with Me. I can handle them. Do not worry or be anxious about anything.
Pray about everything. Bring your requests to Me with thanksgiving. I will give you the peace that passes all understanding. I shall keep your hearts and minds through my Son Christ Jesus.
I tell you. I am the King of Kings and Lord of Lords. I am Love. I am the Great I Am. I am the Wonderful Counselor. I am the Lord God Almighty. I am that I Am.
I love you - I love you - I love you
HAPPY MOTHER'S DAY! HAVE A WONDERFULLY BLESSED DAY!
Mark 3:33-35 "Who is my mother? Who are my brothers?" Then he looked at those around him and said, "These are my mother and brothers. Anyone who does God's will is my brother and sister and mother."
I tell you mothers. I love you with my everlasting love. My everlasting love is upon you and my everlasting arms are underneath you. I draw you to me with cords of my love.
I reach out my royal scepter to you. I call you into my Holy of Holies. I have chosen you to be the mother of my children. I bring your children forth from your womb. You are highly favored.
My Holy Spirit shall come upon you and the power of the highest shall over shadow you. Therefore, the Holy Child shall be called the Son of the Highest.
You shall bear my Son within you and carry Him so all the world will see the light of my Son and the love of my Son. I tell you be bearers of my Son.
I tell you. I desire that each of you bring forth my Son in actions of love. By this shall all men know that you are my disciples if you have love for one another.
I tell you. I fill you with my Spirit, for with Me nothing shall be impossible.
I tell you. Do not be cast down or cast out. Be blessed. Cast your cares upon Me.
Why do you let your cares weigh you down? Leave your cares with Me. I can handle them. Do not worry or be anxious about anything.
Pray about everything. Bring your requests to Me with thanksgiving. I will give you the peace that passes all understanding. I shall keep your hearts and minds through my Son Christ Jesus.
I tell you. I am the King of Kings and Lord of Lords. I am Love. I am the Great I Am. I am the Wonderful Counselor. I am the Lord God Almighty. I am that I Am.
I love you - I love you - I love you
HAPPY MOTHER'S DAY! HAVE A WONDERFULLY BLESSED DAY!
Thursday, May 7, 2009
There Really Are Honest People in the World.
Last night Bill and I went to church to meet with one of our Pastors to go over some things for Liliana's Dedication coming up the 24th. After the meeting Bill brought Lily home to give her her last feed and get her in bed, while I stayed like I usually do till Gwynny was done with her Rainbows class. We had special guests there last night which was the Christian Community School Choir. They are a youth choir that travels around to different churches and sings, presents a drama presentation, and their personal testimonies. It was a really great service! Anyways, when everything was over I went back to pick up Gwynny and talked to some friends for a few minutes. I grabbed our Crocs bag and gathered up Gwynny and we headed home. It was after 9pm when we got home which is the norm and Bill and I got Gwynny in bed as quickly as possible upon arriving. I finally sat down for a minute to chill out and watch a little t.v. when the doorbell rang. It startled me! Who could possibly be ringing my doorbell at 10:23pm? Bill came downstairs and answered the door. Next thing I know he was thanking the person and turning around to bring me my Coach clutch purse and said, "You would forget your head if it wasn't connected." Oh my Gosh! You mean to tell me that I left my purse at church, didn't even know it, and some honest person drove all the way over here to my house to return it? You've got to be kidding me! I immediately looked in my purse because of course I have several bank cards, credit cards, and cash in there. Everything was there! All of it left in tack! I couldn't believe it! Thank the Lord! I felt sooooo relieved! I can't even imagine how devastating things could have been if I had never got it back. My life could have been ruined. People say there is no God and that honest people do not exist. Well, I am here to say that they do. I asked Bill who it was that came to our house and he didn't recognize the man. All he said was that it was an older man with gray hair which could mean anyone. Another part of me feels very stupid about having this happen to me. I feel like I have become more scatterbrained since Liliana has become a part of our lives. I constantly have to worry about taking care of her needs that I tend to forget about myself which in turn makes me do silly things. Hopefully, this will be a learning lesson for me. Stop putting my clutch purse in the side pocket of our Crocs bag. Instead I will put it in the inside pocket so it doesn't fall out. Hope today is a better day! LOL
Tuesday, May 5, 2009
My First Official Trip!
This past weekend we (Bill, Gwynny, Lily, and I) ventured off to Cincinnati Ohio to attend our nephew's First Communion. He didn't actually make his first communion until Sunday but we went down on Friday so we could spend a little more time with the cousins before the BIG day. We drove down following Grandma and Grandpa K. in their van and stopped at Bob Evan's for some lunch. Afterwards, we were going to stop at COSI Science Center in Columbus but time was getting away from us and we wanted to get to Cincy so we opted out of it. We arrived and Gwynny was in her glory! She loves her cousins Max and Jessie! We grilled out for dinner and the kids played. Jessie and Gwynny even put on a talent show after dinner. Soooo cute! On Saturday, after a lazy morning start we went to the Cincinnati Children's Museum so Gwynny could play and have some fun! Boy! did she ever have fun! She loved the kitchen and grocery store play areas and spent the majority of her time there. Lily also got to play in the the Little Sprouts area where I let her roll on the mats for a little bit. After a few hours of play we headed back to Aunt Net's and Uncle Ron's house to make a taco dinner and then a fire afterwards with all the fixins for 'Smores! Yummy! We went to bed rather early since we were all tired and we had to get up the next day to go to church. Thank goodness the mass didn't start until 11:30 since there were a lot of us that needed to take showers and get ready. All in all it was a really nice service and Liliana was a little angel in church! She fell asleep on my lap as she usually does during church. Gwynny was the one that was a handful! All she kept asking me was "Mommy, I want a snack." Over and over again she asked even though I repeatedly told her I didn't have a snack. It's amazing how they think we can pull out a magic wand and "poof!" a snack will appear. Knew I should of thrown those goldfish crackers in there! Oh Well! We came back to Aunt Net's and Uncle Ron's and had a really nice spread of food before loading up our van and heading home. Whew! I am tired! We had a really good time and I would love to take the girls back again sometime this summer. I have been playing catch-up yesterday and today between therapy sessions for Liliana and unpacking and doing laundry! Thank Goodness both girls are taking a NAP today! Yeah for Mommy! Well, back to business. More later.
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